Symposium on Dementia and Love

Small Acts of Love By Fiona Watson

OVER the two days of a significant national symposium focussing on dementia and love, recently held in Ballarat, Small Acts of Love were demonstrated time and time again as people diagnosed with dementia, their family members and carers spoke of the challenges they confront on a daily basis as they all manage an altered state of living. Such was the unique aspect of the symposium that it attracted participants from the United States of America, Queensland, New South Wales, South Australia, Western Australia and, of course, Victoria. Sharon Knight MLA was the first speaker to acknowledge that with the increasing number of people affected by dementia, governments need to do more to help. Convenor of the symposium Dr Catherine Barrett believed that there was a real need for health professionals and clinicians to move away from a medical model of care to one that engaged more deeply with people whose intimate experiences of dementia shape their lives. Christine Bryden, diagnosed with dementia days before she met her husband, spoke of her fear of revealing the “elephant in the room”. Her husband Paul was not deterred and though he never underestimates the effect of a diagnosis of dementia on a family his absolute love for Christine and her family has never wavered and together they have become resilient as they share her journey together.

Virginia Hunter Sampson from the USA told of her deeper connection with her husband as his dementia progressed. She was determined that his illness would not dictate who he had become. Life was altered but it never stopped them travelling – they just did it in a different way. John Quinn and Glenys Petrie shared John’s heartbreaking story of leaving the education service after a successful career of over 36 years. There was no farewell, no recognition of his outstanding contribution. It had a devastating impact on his life. Not only was he coming to terms with dementia but also, as with so many men, his life had been defined by his career and his achievements. He experienced a diminution of his sense of worth, his identity and his independence. It was truly the unconditional love from his partner Glenys that pulled him through his darkest moments. One of the most well known advocates for people with dementia is Sue PietersHawke, whose mother Hazel was diagnosed with the disease. In recognising that there were so many excellent speakers at the symposium Sue said she was happy to talk on their behalf in order that the message of love, connection and caring could be broadcast to a wider audience. She challenged health professionals to become more

creative in their approach to managing the care of people with dementia. She said it was vital that stories were shared and that everyone understood truths rather than myths about the disease and through education the stigma that is too often associated with the disease can be broken down. Sue acknowledged Dr Catherine Barrett for the ground-breaking symposium that brought together people who bravely shared their stories and whose honesty deeply affected those at the symposium. Her only wish was that there had been greater attendance from health professionals who could have learnt so much from listening to the deeply moving stories. Following the symposium Dr Barrett said that feedback had been extraordinary with many people saying that having learnt so much their relationships had already improved and service providers are now aiming to interact with clients with dementia in a very different way.

Dr Barrett said that Ballarat is fast being recognised as a dementia friendly community. “I was asked – why Ballarat? My response was simple, why not? This is a city that is innovative because of its use of stories and art to promote social change. There is a real sense of community and that is something for which everyone should be very proud.”